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Grief and not eating

Of course now that Little T has regular OT for his arm, I want to work on the next issue: getting feeding therapy for Little T. His lack of eating looms large, a cloud of grief and frustration that hangs over my head every day. In fairy tales, people would die from grief by not eating. And in my darkest moments, I wonder if his lack of eating means he wants to die. Intellectually I know that he's actually getting all the nutrition he needs via tube and he has large reserves of fat. He also smiles and laughs more than ever, and his arm is shrinking every day. But I still mourn the fact that he no longer breastfeeds.

Perhaps I just feel safer to grieve now that he appears to be getting better. Because thinking about his lack of eating often pulls me back to the first day of his life when I got the worst call of my life: a resident called and said that they needed to cut open his left arm, because he had Compartment Syndrome so badly that the nerves in his hand were being crushed. I knew with a certainty that if he had this operation, he would start bleeding to death. I saw it very clearly. His massive vascular tumour of 24cm barely contained under taut skin would simply burst like a water balloon. Blood would start flowing out uncontrollably. But even knowing this, I agreed to the operation. The resident was very insistent that Little T "needed the operation or he wouldn't make it."

C had just left so I could rest. I had just given birth to Little T and I was all alone in the hospital room and I couldn't leave. I called C and all I could convey to him was that I thought Little T was going to die and that he must rush to the children's hospital. I waited and waited for news that he was gone. But at the very last moment, Chang the attending doctor was consulted. They considered the operation an emergency, so had started the process without him. Miraculously the attending decided Little T didn't need the operation and that his left hand did have some circulation and Little T was saved.

Months later, I told Dr. Chang that he saved Little T's life. He replied that no he would have cut off his arm. He had the certainty of someone who has never lost a patient in this way. But to this day, I have the certainty that he would have died. And now after all that has happened, I would have listened to myself even though it sounded crazy and simply refused to allow the operation. I do believe life consists of a series of lessons. Follow your instincts: this journey with Little T has taught me/is teaching me.

But right now I find it hard to separate grief from instincts. All I know is that we need help to sort out whether Little T has treatable medical issues with eating, or he just feels nauseated from the chemo, so he just chooses not to eat.